But You Don’t Look Sick

Four years ago, at the age of 37, I was diagnosed with rheumatoid arthritis. It was the souvenir of a long, near-fatal, crushing bout with MRSA that didn’t respond to anything until I was given a three-month course of twice-daily, intravenous antibiotics. These finally did the trick, but what the specialists didn’t tell me was that when antibiotics are given the task of wiping out an infection, they often take your immune system down in the process. Already prone, via heredity, to the autoimmune disorders that run rampant throughout both sides of my family tree, RA was the outcome that told me I’d be living with the effects of this fight for the rest of my life.

I’m no stranger to illness. I was born with a congenital renal defect that came to light at age 13 when I ended up temporarily paralyzed as the result of stomach flu. I went through a bad bout of kidney failure at age 30, which laid me up in the hospital for nearly six weeks. But even though those were scary incidents, I recovered. Everything was fixable until the RA came along.

For those who don’t know, rheumatoid arthritis has nothing to do with osteoarthritis or the kind of joint pain you get because you’re aging, or because you’ve exercised too much. RA is an unpredictable, painful, exhausting autoimmune disorder that rarely gives its sufferers a break. It attacks the healthy tissue in your body, mostly around your joints, causing severe pain, inflammation, fatigue, and sometimes leaves the body completely incapacitated. RA leaves you vulnerable to every germ floating around, makes it sometimes impossible to do simple things (like standing or walking), and has often left me so tired that I have fallen asleep in the ladies room.

Living with RA requires a very large dose of faith that even on the bad days, when the pain is at its worst, ha-nefesh (the soul) can carry me through the moments when ha-guf (the body) is not functioning. What is most troubling, however, is the fact that aside from the occasional need to use crutches during a bad flare, and the all-too-often present fatigue in my eyes, on the outside, I look fine. There is no obvious sign that I struggle with pain every single day – or in the words of my favorite support website for RA and other invisible illnesses – “but you don’t look sick.”

On the day I received the diagnosis, I went to see my rabbi. I knew that if I was going to be able to live with this disease, I was going to need help, both spiritual and practical. I didn’t know what living with it would mean for my synagogue life: would I have to cut back on my volunteer hours? Would I have to resign from the Board? And what if I was too sick or tired to go home and change before Friday night services? Would anyone care if I showed up “as is?” Those were all the tachlis (real-life) questions for which I felt like I needed answers. And then there were the larger questions: growing up as a Catholic, I had been taught to believe that illness was a direct consequence of sin and wrongdoing. I worried that somehow it was my fault. That something I had done had merited having to live in pain for the rest of my life.

As always, my rabbi had great wisdom to share, and very gently, dealt with my childhood belief in the best way he knew how. I remember that he told me that I had to re-train myself to see my illness as part of who I was becoming. That while it was unpredictable, there were certain things that would stay true and sure: my community would always be there to support me, and that would never change. That I could keep up my volunteer hours for as long as I felt well enough, and if I didn’t, we would find a way to manage my involvement. And most of all, I needed to let go of my old belief that illness was punishment, and instead, learn how to see God in the medicine, and in the doctors who were treating me, and in the eyes, hands and hearts of my synagogue community, who would certainly understand if I showed up on Friday night in blue jeans and on crutches, or if I needed to grasp the chair in front of me in order to stand for the Amidah. He taught me that even though my illness was invisible, I was not.

The intervening years since my diagnosis have not been easy. But I have learned things about myself that I never expected to discover: I have learned that I can rally myself to push through the bad days; and that in the midst of the most painful of flares, I can still put on a dress and makeup and travel to give a lecture. I have learned that having a full-time job in synagogue communications, being an author, and serving on my many temple committees requires a delicate choreography of pain-, time-, and energy-management. I have learned how to gracefully accept help, concern and compassion from my colleagues and from my co-congregants.

And I have even learned to see myself in Torah – in Jacob’s limp, in Leah’s determination, in Sarah’s doubtful laughter, and in Rebecca’s multitasking. In her story, I embroider the detail that perhaps she was tired and hurting after a day in the fields, but her generosity in offering to water a stranger’s camels was the final act of loving kindness that helped to energize her spirit. It is those little acts of kindness, both given and received, that have helped me to learn how to be sick, and have also helped me to understand that even with physical limitations and bad days, I can still bring value to the community I love.

Ultimately, it is this community that always provides the best of all healing. In the clasp of a hand during our prayers for healing, in the concern in a friend’s eyes, in the quick check-in –- “Are you all right?” — from my rabbi before the start of a meeting, I am strengthened and energized. Surrounded by this support and genuine caring, I am always aware that I have become, somehow, okay with my struggle, because in the eyes of my congregational family, I am never invisible.

Andi Rosenthal is an active member of Larchmont Temple. She works as a synagogue director of communications, and also is the author of The Bookseller’s Sonnets, a National Jewish Book Council “Book of Note” for 2011.

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One Response to “But You Don’t Look Sick”

Thanks, Andi, for this inspiring post! Like you, I have a variety of disabling and painful chronic health conditions, even though like you, I “don’t look sick.” I’m so grateful for the support I have from my Temple family—it makes a world of difference.

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